Summer 2023

Well, we made it to summer! In January of the last school year, Eva was moved to a special education classroom full time.  It was a great switch for her, and she was much happier, which makes us happier.  Her teacher does an awesome job creating fun activities for the students to do, and they are still included in their grade-level holiday parties and field trips.  

We continued to find a medication that worked to help Eva control her impulsive and aggressive behaviors, and after some bumps in the road, she is now on a routine that is helping.  We probably should have started these earlier last year, but we wanted to hold off as long as we could.  Brendan and I wanted nothing more than Eva to be eligible for the gene therapy trial, and we were not sure if medications would affect her eligibility.  After talking with the doctor, we started finding the right combination for Eva.  

At one point, Eva was prescribed Adderall to help her focus, but it had the opposite effect on her, which we found out the hard way.  She was taking it in the morning, but March 26 was a Sunday, and the day before her Nationwide appointment.  We missed the morning dose, and gave her her Adderall in the afternoon.  This was the beginning of a terrible 24 hours.  Between the Adderall making her more hyper, and the excitement over her appointment the next day, Eva stayed up all night.  She was extremely agitated and talking non-stop.  After the terrible tooth experience in the fall, I decided to be more assertive and advocate for Eva as strongly as possible.  Eva suffers enough- as her parents, we do not want her to be uncomfortable or upset, especially if we can prevent it.  At midnight, I could already tell that Eva was not going to sleep.  I called Nationwide Hospital and tearfully explained what was going on with Eva.  I clearly stated, “I am taking her to the emergency room. Do you want me to take her to a Cleveland emergency room or a Columbus emergency room?”  

The on-call neurologist I spoke with was empathetic, but he explained to me that Dr. Emily in Columbus would have the most insight on what to do with Eva, and if we took her to the emergency room at midnight, she might miss her 8 AM appointment with Dr. Emily in the morning.  What I should have done at this point, I do not know.  What I did was put on two movies for Eva to watch, which somewhat subdued her manic talking and racing thoughts.  However, after two movies, Eva did not want to watch a third movie, nor was she ready to sleep.  She was extremely agitated.  I started crying, and sat on the kitchen floor in defeat.  She walked by me and casually asked, “Mommy, who murdered you?”  Then, before I had time to form a response, she said, “Hate you,  Punch you in the face,” which is a common response for her when she is frustrated- she hates whoever is closest to her.

At 4 AM, I had had enough.  We called Brendan’s dad to come over and sit with Vivian and Everett and get them on the bus, and we headed to Columbus.  By the time we got on the highway, Eva was quiet, but she did not succumb to sleep for another hour or two.  We pulled into Nationwide’s parking lot around 6 AM, and she was asleep.  Brendan and I then slept in the car with her until her 8 AM appointment.  We were all fatigued and disheveled.  Dr. Emily and her staff were all wide-eyed when we explained what had been going on.  Dr. Emily knew right away that Adderall was the root cause of our problems.  

They did their evaluations, and then decided to do an EEG (they connect wires to Eva’s head and monitor her brain while she sleeps).  Eva has to be sleep-deprived for an EEG, and since she sleep-deprived herself voluntarily, Dr. Emily decided to take the opportunity to do the test.  The EEG revealed that Eva is having staring seizures.  She now has to carry emergency seizure medication in case of a visible seizure that lasts longer than five minutes, or more than three seizures in an hour.  We have not seen a seizure yet, and I try not to think about it too much.  

We also found out that gene therapy is officially canceled.  Brendan and I went into the appointment assuming we were not going to hear positive news about gene therapy, but hearing that the window is closed was difficult to accept.  

Eva is now on a regime of an antipsychotic, and anti-seizure, and a medication to control impulsivity.  All three medications have a sedative effect as well to help Eva stay calm, and to sleep through the night.  Throughout the entire month of April, Eva was only sleeping a few hours at a time.  She kept going into Vivian’s room at night and climbing in her bed, sometimes talking to her as well.  One night, she went into Vivian’s room and was talking to her, and then went into Everett’s room, sat on him, and was talking to him.  I think I floated through the month of April.

For spring break, I really wanted to go to the beach!  With all of the stress leading up to spring break, I needed it more than ever.  Eva’s behavior is always much better on vacation, and I was desperate for some happy moments with her.  I decided to drive the kids to Tampa, where my dad has stayed the last few winters.  Brendan could not drive with her, as he had to work until Wednesday of the week the kids and I were off, so my brother, Jeff, drove down to Tampa with us, after flying to Cleveland from Chicago, where he lives.  Jeff is such a chill and calm person that he was the perfect co-pilot for driving three kids 16 hours to Florida.  Eva was very good the entire trip, and we had an awesome time.  We went to the beach, Eva was brave and went down a large inflatable slide, and we had a nice family dinner the night before we all went our separate ways.

When we came home, the Tampa spell was broken.  Eva fell back into some bad habits and routines that we thought had changed due to the new medication routine.  It was a hard crash, but we powered through one step at a time.  Eventually, the new medication did kick in, and we now have many nights of good sleep, and many happy days with Eva.  

Eva got a yearbook at the end of the school year, and is still carrying it around, asking everyone to sign it.  She is VERY excited to be in fourth grade next year.  

This summer, Vivian is playing softball- she is a great hitter, and has really improved from last year!  Everett is playing baseball- his hitting has also improved.  Many people have taken Vivian and Everett under their wing, and they have been exposed to a variety of activities and have been included in many fun things, and I am grateful for every person who helps enrich their lives. Vivian is still interested in making movies and writing stories, and Everett is obsessed with football, football facts, and organizing his football cards.  I am very proud of Brendan- he handled it well when Everett announced that his favorite team is the Browns, not the Buckeyes.  However, he did say the Buckeyes were his second favorite team.

Eva’s summer activities all stem from Youth Challenge, a local organization that has activities for kids with special needs.  It is a completely free program- they do ask for donations for the activities if families are able- and they will pick Eva up from our house or from school.  They also partner the kids up with teen volunteers, and Eva loves all of her helpers at Youth Challenge.  This summer, she is signed up for mini camp, and outdoor activities. 

It has been a good start to summer- lots of playdates, baseball, and time in the pool.  I hope everyone enjoys the sunshine, and am grateful for the positive changes in Eva’s behavior, and we are continuing to enjoy the time we have with her.